Over the past decade, substantial progress has been made in building the evidence base for integrating palliative care with cancer care and increasing the availability of palliative care services for patients with cancer. Multiple clinical trials have evaluated proactive care models in which patients begin to receive palliative care services on the basis of an initial diagnosis of advanced cancer or disease progression. The goal of these delivery models is to improve patients’ experiences and outcomes throughout their illness course rather to wait to involve palliative care until they are struggling with uncontrolled symptoms. These studies have demonstrated that earlier and longitudinal involvement of palliative care improves patients’ quality of life, mood, and satisfaction with care. Several studies also have shown that earlier involvement of palliative care enhances the experience of patients’ caregivers and leads to improved communication and delivery of end-of-life care. As these data emerged, ASCO and several other national organizations endorsed the early involvement of palliative care for patients with advanced cancer, which has substantially transformed the practice of palliative care in oncology.
Background: Studies suggest palliative care may be different in cystic fibrosis (CF) than in other conditions. To provide quality palliative care to individuals with CF, unique needs must be understood.
Objective: To examine perceptions of how palliative care may be different in CF, top palliative needs of individuals with CF, and barriers to palliative care in CF.
Methods: Online surveys with closed- and open-ended questions about palliative care needs were administered to multiple stakeholders in CF care, including adults with CF, caregivers of individuals with CF, and CF care team members from U.S. centers. We used descriptive statistics to report survey findings.
Results: A total of 70 adults with CF, 100 caregivers, and 350 care team members completed surveys. While care team members reported they introduce palliative care to patients a majority of the time, adults with CF and caregivers rarely recalled learning about it. Very few reported having seen a palliative care specialist. A majority of participants reported that palliative care is valuable in CF care. Over 80% of participants felt palliative care is different in CF, most often citing the unpredictable disease course. Top palliative care needs identified include emotional support, emotional symptom management, and communication about treatment decisions. Major barriers to palliative care identified include perception that it is for dying people and lack of CF care team knowledge and training in palliative care.
Conclusions: Participants felt palliative care is valuable in CF and identified many palliative care needs, and also barriers that can be addressed with education and training. Our findings will be used to develop interventions targeting specific needs and inform guidelines to enhance provision of palliative care in CF.
The delivery of palliative care to patients with advanced cancer and their families, whether done by oncology clinicians or palliative care clinicians, requires patient-centered communication. Excellent communication can introduce patients and families to palliative care in a nonthreatening way, build patient trust, enable symptom control, strengthen coping, and guide decision making. This review covers deficiencies in the current state of communication, patient preferences for communication about palliative care topics, best practices for communication, and the roles of education and system intervention. Communication is a two-way, relational process that is influenced by context, culture, words, and gestures, and it is one of the most important ways that clinicians influence the quality of medical care that patients and their families receive.
Background: Fluid management is a clinical challenge in patients with end-stage renal disease (ESRD), especially among those who opted for conservative treatment. We initiated a comprehensive program of psychosocial interventions.
Objectives: To study the impact of this psychoeducational (Appropriate amount of intake, Self-efficacy, and Adherence [ASA]) program on symptom burden and acute admission rates related to fluid overload (FO) in this group of elderly ESRD patients attending renal palliative care outpatient clinic under our division.
Methods: All elderly (age >60 years) patients who were followed in our renal palliative clinic had one or more acute admissions related to FO during the first three months were identified and invited to participate in this program. The palliative care nurse assessed each pair of patient/caregiver before doctor consultation, documented the symptom burden by the Edmonton Symptom Assessment Scale, provided symptom advice with use of pamphlets, monitored fluid and drug compliance, and provided psychosocial-spiritual support. The patient symptom score, body weight (BW), and three month acute admission episodes were compared before and after psychoeducation interventions by paired t test.
Results: Data from 138 patients were analyzed. Of them, edema, shortness of breath, and insomnia occurred in 131 (95%), 67 (49 %), and 44 (32%) patients, respectively. A total of 125 patients (90.6%) had poor fluid/diet compliance, whereas 59 patients (42.7%) had poor drug compliance. The BW decreased significantly from 57.1 (12.8) kg at baseline to 52.5 (13.6) kg after three months of the ASA program. The acute admission rate related to FO dropped significantly from 7.6 episodes/patient/year to 6.4 episodes/patient/year.
Conclusion: Our data demonstrated that the ASA program could improve patient symptoms and reduce acute hospital admissions, and thus improve the overall patient wellbeing and reduce health care utilization. Further studies are required to delineate the efficacy of different components in this ASA program and how to enhance its delivery.
Communicating prognosis clearly and empathically can foster accurate prognostic awareness in patients with advanced cancer and their family members. Whereas patients and doctors desire clear prognostic communication, it presents many challenges in oncologic and palliative care settings. Patients with advanced cancer often have poor prognostic awareness as a result of deficiencies in doctor communication and understandable-and potentially adaptive-attempts by patients and families to reduce the threat of death and maintain hope. Interventions to promote prognostic discussion have largely succeeded in increasing the frequency, but not necessarily the quality, of such discussions, yet have failed to improve prognostic awareness. Because clear communication of prognosis is an ethical mandate, more research is needed to provide an evidence base for teaching and practice in this area.
Objective: To assess levels of knowledge about patients’ rights, surrogate decision-makers, and advance directives among healthcare professionals at three hospitals in France.
Methods: A multicenter, cross-sectional study in three geriatric hospitals in the Paris area (France) in 2015. The participants’ level of knowledge was assessed via an 18-item self-questionnaire on surrogate decision-makers, advance directives, and end-of-life decision-making. The characteristics associated with a good level of knowledge were assessed using logistic regression.
Results: Among the 301 healthcare professionals (median ± standard deviation age: 40.4 ± 10.2 years; women: 73.4 %), only 15.0 % (95 % confidence interval (CI): [19.7–29.5]) correctly answered at least 75 % of the questions on patients’ rights. Respectively 24.6 % [19.7–29.5], 36.5 % [31.1–42.0] and 37.5 % [32.0–43.0] had sufficient knowledge regarding “surrogate decision-maker”, “advance directives”, and “decision-making at the end of life”. In a multivariable analysis, the only factor significantly associated with a good level of knowledge about end-of-life policy was employment in a university hospital, with a non-significant trend for status as a physician.
Conclusions: Our survey of staff working in geriatric care units highlighted the poor overall level of knowledge about healthcare surrogates and advance directives; the results suggest that additional training in these concepts is required.
Practice implications: Continuing education of healthcare professionals on advance directives and surrogate decision-maker should be promoted to ensure rights of elderly patients at the end of life.
A growing body of research demonstrates the feasibility and efficacy of psychological interventions for adult patients with advanced cancer. Findings from quantitative studies of psychotherapeutic interventions with primary psychological outcomes for such patients are reviewed here and recommendations for best practice are made. We consider these interventions according to three broad phases in which they are most commonly applied: soon after diagnosis of advanced cancer, when living with the disease, and at or near the end of life. Cumulative evidence from well-designed studies demonstrates the efficacy of psychosocial interventions for patients with advanced disease to relieve and prevent depression, anxiety, and distress related to dying and death, as well as to enhance the sense of meaning and preparation for end of life. Individual and couple-based interventions have been proven to be most feasible, and the development and use of tailored and validated measures has enhanced the rigor of research and clinical care. Palliative care nurses and physicians can be trained to deliver many such interventions, but a core of psychosocial clinicians, including social workers, psychologists, and psychiatrists, is usually required to train other health professionals in their delivery and to ensure their quality. Few of the interventions for which there is evidence of effectiveness have been routinely incorporated into oncology or palliative care. Advocacy on the basis of this evidence is required to build psychosocial resources in cancer treatment settings and to ensure that psychological care receives the same priority as other aspects of palliative care in oncology.
Pediatric palliative care aims to alleviate suffering and improve the quality of life of children with serious disease and increase support for their parents and other family members. Integration of palliative care into the routine care of children, adolescents, and young adults with cancer has resulted in improved outcomes in patients and their families. The field of pediatric palliative oncology-encompassing primary palliative care provided by the multidisciplinary oncology team as well as subspecialty palliative care provided by the palliative care team for more complex cases-is unique from palliative care in adults given its focus on care of the child and the larger family. In this review, we focus on advancements in the specific domains within pediatric palliative oncology care including family-centered communication, assessment and management of physical symptoms and distress, psychosocial concerns, and spiritual considerations of the patient, parents, and siblings.
Rationale & Objective: Older patients with advanced chronic kidney disease (CKD) utilize intensive care at the end-of-life and die in a hospital more frequently than patients with cancer or heart disease. Advance care planning (ACP) can help align treatment with patient preferences and improve patient-centered care, yet ACP quality and experiences among older patients with CKD and their care partners remain incompletely understood, particularly among the non–dialysis-dependent population.
Study Design: n-person, interviewer-administered surveys of patients 70 years and older with non–dialysis-dependent CKD stage 4 or 5 and their self-identified care partners.
Setting & Participants: 42 participants (31 patients, 11 care partners) at two clinical sites in Greater Boston
Outcomes: Completion of advance directives, and self-reported perceptions, preferences, and experiences of ACP.
Analytical Approach: Descriptive analysis of patient and care partner surveys. McNemar’s test analysis to compare patient and care partner responses.
Results: Most patients had written advance directives (64%) and surrogate decision makers (81%). Although patients reported positive perceptions and high trust in their clinicians’ judgment, few (16%) had actually discussed preferences for life-sustaining treatment with their nephrologists. Few ACP discussions included components reflective of high-quality ACP: 16% of patients had been asked about their values concerning end-of-life care and 7% had discussed issues of decision-making capacity and consent to care should their health decline. When presented with two hypothetical scenarios (stroke/heart attack, or dementia), nearly all patients and care partners reported a preference for comfort care over delaying death. Care partners were more likely than patients to report that they had experienced discussion components reflective of high-quality ACP with the clinical team.
Limitations: Single metropolitan area; most patients did not identify a care partner, non-response bias and small sample size.
Conclusions: Patients often believed that their clinicians understood their end-of-life wishes despite not having engaged in ACP conversations that would make those wishes known. Improving clinical ACP communication may result in end-of-life treatment that better aligns with patient goals.
In the United States, racial and ethnic minorities and people with lower socioeconomic status (SES) face structural, health system, and interpersonal barriers to optimal health care, including palliative care. Much of the available data on palliative care in racial and ethnic minorities and people with lower SES have identified disparities according to race, ethnicity, and SES. Limitations to understanding disparities in palliative care include the fact that much of the available data are cross-sectional, drawn from administrative or claims data, or based on qualitative work in limited geographic areas. To advance our knowledge and achieve health equity with respect to palliative care in patient groups that have been understudied or that are known to receive disparate care, gaining a deeper understanding of the barriers to palliative care is necessary from patients, families, referring providers, and communities. In addition, cultural competency training for all members of the palliative care team and referring providers needs to be changed from being obligatory to being intentional and assessed continuously. Finally, concerted changes in coordination of care, payment structures, and policy are needed.
Palliative care began in academic centers with specialty consultation services, and its value to patients, families, and health systems has been evident. The demand for palliative care to be integrated throughout the cancer trajectory, combined with a limited palliative care workforce, means that new models of care are needed. This review discusses evidence regarding the need for integration of palliative care into routine oncology care and describes best practices recognized for dissemination of palliative care. The available evidence suggests that palliative care be widely adopted by clinicians in all oncology settings to benefit patients with cancer and their families. Efforts are needed to adapt and integrate palliative care into community practice. Limitations of these models are discussed, as are future directions to continue implementation efforts. The benefits of palliative care can only be realized through effective dissemination of these principles of care, with more primary palliative care delivered by oncology clinicians.
The National Cancer Institute estimates that $154 billion will be spent on care for people with cancer in 2019, distributed across the year after diagnosis (31%), the final year of life (31%), and continuing care between those two (38%). Projections of future costs estimate persistent growth in care expenditures. Early research studies on the economics of palliative care have reported a general pattern of cost savings during inpatient hospital admissions and the end-of-life phase. Recent research has demonstrated more complex dynamics, but expanding palliative care capacity to meet clinical guidelines and population health needs seems to save costs. Quantifying these cost savings requires additional research, because there is significant variance in estimates of the effects of treatment on costs, depending on the timing of intervention, the primary diagnosis, and the overall illness burden. Because ASCO guidelines state that palliative care should be provided concurrently with other treatment from the point of diagnosis onward for all metastatic cancer, new and ambitious research is required to evaluate the cost effects of palliative care across the entire disease trajectory. We propose a series of ways to reach the guideline goals.
Mounting evidence supports oncology organizations' recommendations of early palliative care as a cancer care best practice for patients with advanced cancer and/or high symptom burden. However, few trials on which these best practices are based have included rural and remote community-based oncology care. Therefore, little is known about whether early palliative care models are applicable in these low-resource areas. This literature synthesis identifies some of the challenges of integrating palliative care in rural and remote cancer care. Prominent themes include being mindful of rural culture; adapting traditional geographically based specialty care delivery models to under-resourced rural practices; and using novel palliative care education delivery methods to increase community-based health professional, layperson, and family palliative expertise to account for limited local specialty palliative care resources. Although there are many limitations, many rural and remote communities also have strengths in their capacity to provide high-quality care by capitalizing on close-knit, committed community practitioners, especially if there are receptive local palliative and hospice care champions. Hence, adapting palliative care models, using culturally appropriate novel delivery methods, and providing remote education and support to existing community providers are promising advances to aid rural people to manage serious illness and to die in place. Reformulating health policy and nurturing academic-community partnerships that support best practices are critical components of providing early palliative care for everyone everywhere.
OBJECTIVE: The purpose of this study is to understand the attitude of undergraduate nursing students toward advanced care planning (ACP) and their willingness to implement ACP and to analyze its influencing factors, so as to provide evidence-based basis for life and death education and ACP-related training in colleges and universities.
METHODS: A total of 312 nursing undergraduates from a university in Chengdu (China) were surveyed by using general information questionnaire, attitude scale of ACP, and willingness questionnaire to implement ACP.
RESULTS: The scores of undergraduate nursing students' attitude toward ACP were 24.97 ± 2.75, and the scores of total willingness to ACP were 79.26 ± 9.70. Univariate analysis and multivariate linear regression analysis showed that religious belief, grade, family relationship, and family discussion of death were the factors influencing the willingness of nursing students to carry out ACP.
CONCLUSIONS: The attitude of undergraduate nursing students toward ACP tended to be positive, but their cognition of ACP was misunderstood, and their willingness to implement ACP needed to be improved. To improve the awareness and implementating willingness of undergraduate nursing students to ACP, it was recommended that colleges and universities carried out systematic standardized life and death education courses and ACP-related training.
Palliative care has evolved over the past five decades as an interprofessional specialty to improve quality of life and quality of care for patients with cancer and their families. Existing evidence supports that timely involvement of specialist palliative care teams can enhance the care delivered by oncology teams. This review provides a state-of-the-science synopsis of the literature that supports each of the five clinical models of specialist palliative care delivery, including outpatient clinics, inpatient consultation teams, acute palliative care units, community-based palliative care, and hospice care. The roles of embedded clinics, nurse-led models, telehealth interventions, and primary palliative care also will be discussed. Outpatient clinics represent the key point of entry for timely access to palliative care. In this setting, patient care can be enhanced longitudinally through impeccable symptom management, monitoring, education, and advance care planning. Inpatient consultation teams provide expert symptom management and facilitate discharge planning for acutely symptomatic hospitalized patients. Patients with the highest level of distress and complexity may benefit from an admission to acute palliative care units. In contrast, community-based palliative care and hospice care are more appropriate for patients with a poor performance status and low to moderate symptom burden. Each of these five models of specialist palliative care serve a different patient population along the disease continuum and complement one another to provide comprehensive supportive care. Additional research is needed to define the standards for palliative care interventions and to refine the models to further improve access to quality palliative care.
Patient-defined factors that are important at the end of life include being physically independent for as long as possible, good symptom control, and spending quality time with friends and family. Hospice care adds to the quality of care and these patient-centered priorities for people with cancer and their families in the last weeks and days of life. Evidence from large observational studies demonstrate that hospice care can improve outcomes directly and support better and more appropriate health care use for people in the last stages of cancer. Team-based community hospice care has measurable benefits for patients, their family caregivers, and health services. In addition to improved symptom control for patients and a greater likelihood of time spent at home, caregiver outcomes are better when hospice care is accessed: informational needs are better met, and caregivers have an improved ability to move on with life after the patient's death compared with people who did not have access to these services. Hospice care continues to evolve as its reach expands and the needs of patients continue to broaden. This is reflected in the transition from hospice being based on excellence in nursing to teams with a broad range of health professionals to meet the complex and changing needs of patients and their families. Additional integration of cancer services with hospice care will help to provide more seamless care for patients and supporting family caregivers during their caregiving and after the death of the patient.
Although robust evidence demonstrates that specialty palliative care integrated into oncology care improves patient and health system outcomes, few clinicians are familiar with the standards, guidelines, and quality measures related to integration. These types of guidance outline principles of best practice and provide a framework for assessing the fidelity of their implementation. Significant advances in the understanding of effective methods and procedures to guide integration of specialty palliative care into oncology have led to a proliferation of guidance documents around the world, with several areas of commonality but also some key differences. Commonalities originate from a shared vision for integration; differences arise from diverse roles of palliative care specialists within cancer care globally. In this review we discuss three of the most cited standards/guidelines, as well as quality measures related to integrated palliative and oncology care. We also recommend changes to the quality measurement framework for palliative care and a new way to match palliative care services to patients with advanced cancer on the basis of care complexity and patient needs, irrespective of prognosis.
Advanced cancer, with its considerable physical symptoms and psychosocial burdens, represents an existential threat and major stressor to patients and their caregivers. In response to such stress, patients and their caregivers use a variety of strategies to manage the disease and related symptoms, such as problem-focused, emotion-focused, meaning-focused, and spiritual/religious coping. The use of such coping strategies is associated with multiple outcomes, including quality of life, symptoms of depression and anxiety, illness understanding, and end-of-life care. Accumulating data demonstrate that early palliative care, integrated with oncology care, not only improves these key outcomes but also enhances coping in patients with advanced cancer. In addition, trials of home-based palliative care interventions have shown promise for improving the ways that patients and family caregivers cope together and manage problems as a dyad. In this article, we describe the nature and correlates of coping in this population, highlight the role of palliative care to promote effective coping strategies in patients and caregivers, and review evidence supporting the beneficial effects of palliative care on patient coping as well as the mechanisms by which improved coping is associated with better outcomes. We conclude with a discussion of the limitations of the state of science, future directions, and best practices on the basis of available evidence.
Evaluating a patient with brain injury (traumatic or not traumatic) is challenging. Potential outcomes are often unclear as the manifestations of brain injuries evolve over time and can result in dynamic changes in conciousness. This can create confusion for prognostication and clinnical decision making. Appropriate classification of disorders of conciousness (DOC) involves a careful assessment of neurological function at the bedside and an understanding of the expected time frame during which neurological function can evolve. Although neurological assessment and diagnosis is the role of a neurologist, it is important for palliative care clinicians to understand the diagnosis so they can appropriately educate and counsel families. This Fast Fact aims to help clinicians understand the terminology around DOC. Prognosis in DOC will be discussed in a future Fast Fact.